At End of Life, Measure What Patients Value

Expert discusses strategies to treat patients in their last years of life

People live longer thanks to modern medicine. However, care providers can sometimes fail to account that people living to an advanced age are often coping with multiple chronic illnesses and likely do not fall under a standardized treatment regimen. It's a stage in the final years of life that more people will pass through as our demographic ages, yet providers often don't make the distinction.

Lynn elaborated on her JAMA commentary in an interview with HealthLeaders Media. The following is an edited transcript.

Q: How did this disconnect develop between the patients' values and the care regimen?

A: We inherited a healthcare system that was thought of mostly as a fix-it model. You get a gall bladder attack and you get your gall bladder out. You break a bone, you get it set. For most of history, the reason to go to a doctor was to get something fixed. That is a very good thing. If things can get fixed let's do it.

If things can be prevented let's prevent them. The upshot of doing that well is that we have changed how we come to the end of life. For the first few years in the 1900s people were mostly healthy until they died. The person had something devastating happen, an infection or an accident or childbirth, and then died very quickly. Now, those things will all be averted and you will live with progressively weakening body systems and we need a very different care system for that part of life.

A lot of the time people who are sick are getting their care in the emergency room, they're getting their care from a hospitalist for three days, and then they're moved to a skilled nursing facility for eight days. They feel that they are on a conveyor belt and things are being done to them with nobody getting to know their hopes and fears, and their capabilities and resources and limitations.

We need to measure that care system differently because it is trying to provide different things. What I want is a care system that has continuity and that is concerned about my hopes and fears, and tailors a set of services to what I most need, rather than assuming that they're going to come in and fix it.

Q: How is our healthcare system failing to address the needs of people who may not require hospice care, but who are often in the last years of their lives?

A: This idea that you can do special things for these people who are neatly labeled 'terminally ill' is now one of the things that is in the way of doing a good job for people who are just living with the ravages of old age.

For the person who is living with advanced illness but without a predictable timing of their death, we need to be able to provide long-term support. We know they are in the shadow of death, that it could happen relatively quickly and at any time, but the person could live a long time. We haven't redesigned the care structure around that sort of person.

Q: Are you seeing this disconnect first hand?

A: I take care of very sick people and see that the quality measures that are commonly in use are very much a misfit for a population at this stage in their lives. This part of most lives is not governed by the usual rules. A personal living with multiple chronic illnesses and serious disabilities and who will likely die within the next few years, there is not much sense in putting him through a colonoscopy.

But on the other hand, there might be a tremendous value to learning if this patient wants to finish the great American novel or to get right with God or to avoid spending the family savings. People have very different priorities as they get toward the ends of their lives.

It really matters what are your hopes and fears, but we don't measure any of that. We measure in terms of professional standards. The cardiologist says you ought to be on these three drugs, and the oncologist says we need cancer screenings for people of this age. For the usual person at this age, yes. But what about a person who is facing a really serious illness?

Q: What are patients telling you?

A: Patients usually don't actually know to complain about the quality metrics. It's the doctors and social workers and nurses who say 'this is crazy! Why are we doing this to this person who either cannot benefit or wouldn't want it if they realized why we are doing it?'

There are some patients who are asking 'why am I still getting a mammogram when I am dying of kidney cancer or leukemia?' And everybody will stop and say 'Oh yes. Of course.' But most people will go along with it because the doctor ordered it and they don't think it through.

Q: Isn't this something that could be measured through patient satisfaction scores?

A: No. Most patients tend to be unduly satisfied. The majority of people make peace with what they have. There are some people who you can't satisfy no matter what you do. So, the variation is within a small range that is actually sensitive to the care that the person got. Plus, real charlatan care can be satisfying to the patient. You wouldn't want to measure only what the patient was satisfied with.

We should aim for a higher standard, and that should be that people really feel they got the best chance they could of living meaningfully and comfortably on their own terms as they get to the end of their lives.

Most of us now will live for a few years with serious disability and we haven't learned yet how to judge that piece of time. We talk about 'let's see if we can keep you from getting a pressure ulcer,' but that's not a reason to stay alive.

It's more 'can you maintain your role in the family? Can you do things that are satisfying for you? Can you attend to your spiritual issues? Can you avoid impoverishment?' For many people, they would like to stay in their own home as long as possible. Did people try to do that rather than put them in a nursing home at the first opportunity? There are a number of things that lots of people would say are important. And there are the idiosyncratic ones. The person who has an unusual preference -- that is terribly important to that person.

Q: How would you measure patient values?

A: I would love to ask patients and families if they feel their care team is trying to help them achieve what matters most to them. It could be a five-point scale, and work toward having patients say 'yes. Of course!' When you talk to people about the experience they've had living with very serious illness with a family member, lots of people tell you how they felt blindsided.

The people who got a good deal will very tellingly say 'weren't we lucky my sister was a nurse, or my neighbor was a doctor.' Or they'll have some reason why things were lucky. We don't say we were lucky that the obstetrician caught the baby. We expect the obstetrician to catch the baby. I would love to get to the point where people expect to feel well supported through this period of their lives, where they are in a care system that is reliable, where if there is a mistake it's an unusual event, rather than what is expected.

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